UsTOO International turns 20

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Tony Crispino
Veteran Member

Date Joined Dec 2006
Total Posts : 8128
   Posted 8/20/2010 11:17 AM (GMT -6)   
This weekend in Chicago, there will be a celebration of the largest live prostate cancer support in the world. UsTOO International is turning 20 years old. Here is a post from the InfoLink commemorating that celebration:

Here is the UsTOO Mission statement:

The mission of Us TOO is to help men and their families make informed decisions about prostate cancer detection and treatment through support, education and advocacy.


I first started receiving support for my cancer here at HealingWell. I discovered UsTOO online at I got involved with UsTOO at the local Las Vegas chapter and I learned instantly that live support is just as valuable as the online support I received here. With qualified physician guest speakers, there was added value to our meetings. It costs nothing to join an UsTOO group except your time to attend the meetings. Last year our 15 year chapter president retired his post. Yours truly was elected to run the group and I still do today. We had a meeting last night with a fantastic oncologist in Nicholas Vogelzang giving us the very same presentation that he did at the American Society of Clinical Oncology (ASCO) last month and will be repeating on September 11 in Los Angeles at the Prostate Cancer Research Institute (PCRI) meetings.

Support groups go a long way in educating patients to make sound decisions, I know I don't have to tell any of you folks that. I applaud the efforts of UsTOO and will do my part to continue trying to help grow a fantastic community.

Happy Birthday, UsTOO International

Tony Crispino
Prostate Cancer Forum Moderator
Las Vegas Chapter President
UsTOO International
Prostate Cancer Education and Support

Someone to talk to...
...Who understands

Post Edited (TC-LasVegas) : 8/20/2010 11:21:07 AM (GMT-6)

Veteran Member

Date Joined Oct 2006
Total Posts : 1210
   Posted 8/20/2010 12:29 PM (GMT -6)   
Congratulations on 20 years of success for this great organization. Sure hope you'll stick around for another 20 or more.

Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 days - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09 <0.04; JAN 10 <0.04; Jul 10 <.04

Veteran Member

Date Joined Dec 2008
Total Posts : 3149
   Posted 8/21/2010 3:51 PM (GMT -6)   
Tony is this meeting going to be put onto a video, so we whom didn't make it to the meeting can hear or see it and grasp some of those details, and information????

If that can happen please adivse with a link. Or if you have anyone whom could summarize in brief what is said and implications of those words or findings. Many would be all ears. Sounds pretty good as to whom is speaking.
If you wanted to sum up what Dr. V said at your local meeting...I got my ears on too.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35 normal, ct and bone scans appearing clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off for 1 yr., controlled so well, resumed, using intermittently, pleased with results

Veteran Member

Date Joined Jul 2009
Total Posts : 1267
   Posted 8/21/2010 5:12 PM (GMT -6)   
Good on you Tony. And good on UsToo.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02

Veteran Member

Date Joined Aug 2007
Total Posts : 1015
   Posted 8/21/2010 5:27 PM (GMT -6)   
Thanks for the news link and the announcement, Tony!

A quote from article said...
... We need to get beyond the constant squabbles over when to give PSA tests and what they mean. We need to remember that what worked for each of us as an individual may not be appropriate for the next patient in the line. We need to understand that the newest “hot” treatment isn’t necessarily the best. And above all we need to remember how we felt the very first day we were told we had cancer — and just how little we then knew ourselves.

IMHO, this quote provides a great compass for all of us in the PCa club.

I hope this conference brings the advocacy groups together. We really need that to happen.

We really appreciate your efforts and leadership, Tony.

Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/'07 <0.04; 12/'07 <0.04; 03/'08 <0.04;
06/'08 <0.04; 12/'08 <0.04; 06/'09 =0.06; 09/'09 <0.04; 12/'09 =0.05;
3/'10 <0.04; Latest PSA 6/'10 <0.01
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